The Isolation of Hidden Disability

Lately I have found myself doing very angry things: writing angry emails to the school, waking at 2 am and indulging in a fit of righteous indignation that lasts till morning, crying very angry tears, in short becoming a miserable ball of tightly wound anger. Basically I have found myself becoming a person I have always disliked: someone who is full of their own misery and can talk/think about nothing but miserable stuff. Meh! Bleh!

See, I am angry because almost everyday I am faced with situations that are so frustratingly unfair. Tomorrow Little Miss H performs a violin solo at her school’s harvest concert. I am bursting with pride for my six year old who is doing her second solo recital on one of the trickiest of instruments. But I am feeling gutted at the same time. I want to go and watch my girl perform but I am so worried about how Aiden will handle a concert. There is every possibility that the darkened theater, the acoustics, the excitement of seeing Hanna on stage will prove to be too much. He may start loud verbal stimming, he may start lashing out, he might end up disrupting the performance that young children have worked hard on preparing. And I wouldn’t be surprised if parents glare and hiss at me a la the mum who took her autistic child to watch King and I. And, no, I don’t expect that the Headmaster will launch a social media campaign in my support 😉

What makes me angry is how hidden Aiden’s disability is. If a child has a physical disability then many accommodations are made for them. A child in a wheel chair, for example, would be able to access tomorrow’s concert with ease. A child with a profound intellectual disability will have respite services offered to their parent so that they could go to see the other child’s recital. A child who is marginal, neither here nor there, like Aiden, he and his family are the most isolated and resourceless of people. He cannot go to a special school because he ticks none of the boxes for a profound learning/cognitive/sensory/speech disability. He can only attend a mainstream school for a limited amount of time each day as the demands of a structured classroom  are beyond his development stage. The worst catch is that he only gets access to more support if the school can prove that, despite their best endeavours, they cannot prove that Aiden is making any progress. So my choice is either to watch my 4 year old boy struggle with conforming to school’s demand or hope that he utterly and completely fails compared to his peers. So, do you see now why I am so effing ANGRY?

What makes me angry is how my boy is autistic enough to act out in public, on occasion and usually without any precedence or warning, yet majority of the people observing this behaviour put it down to him being ill mannered and/or badly parented. Aiden’s needs have made a lot of friends drop us as well as leading us to drop a lot of friends/family. We are lucky as we have a very solid core of friends and family who are our rocks. Their constant support, advice, unfailing good cheer, and belief in Aiden gives us so much strength. There is then a second group: who look at Aiden and secretly thank fate that this is not their life’s challenge. Then there is a third group who think that Aiden is the way he is because he is spoilt, we are lax parents who never set limits, let him have too much access to the iPad, etc. So in a way our challenges on Aiden’s journey have given us a pretty profound insight into people’s personalities.

One thing that I can promise you every parent like us hopes for is that their child will grow out of the worst of their challenges. That the the worst of their autistic traits are a development delay and with time, they will catch up. Because there is nothing else to hope for really. The children with hidden disabilities, non-profound learning needs, and high functioning conditions are straddling the fence, spending their formative years in a no-man’s land. I was reflecting the other day that probably since he was 2 years old, I have always analysed everything Aiden has done with the autism angle, since he had been put on the high risk watch list. Everything he does, like shoving a small toy up his nose, I question: is this ‘normal’ behaviour or another autistic red flag? And it’s not just me, every parent of a atypically developing child will echo my thoughts.

So, we will go to the concert tomorrow. Prepared for the worst, we will sit near the exit in case we need to beat a hasty retreat. All the time I will hold on to the small hope that he will calmly sit on my lap and enjoy the music and be happy to see his sister on stage without becoming disruptively excited. And tonight I will lose sleep over this worry and indulge in anger over the unfairness of the worry.

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